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  1. #1
    Join Date
    Dec 2010
    Posts
    6

    Talking The Need To Vent

    I'm new to this forum and am so glad to have found it. This is a difficult condition to endure alone. I feel like I'm screaming with pain, sadness, frustration, fear, anger inside while smiling on the outside out of pride or even a kind of shame at this horrible infirmity. I'm a 35 year old female, was diagnosed at 13 after I badgered my doctor for about 2 years that there was something wrong with my back, and had a fusion at 14. My body feels like it's at least twice my age. This is such a horrible condition to live with constantly. People may know that you feel pain, but really, unless they're living with it they really don't understand what this is like. I feel at the end of my rope often and feel like there's no one who understands what it's like to live in constant and often high levels of pain. There's no relief no matter what time of day, not even sleep gives any kind of respite from it; it wakes me up if I have to roll over or if I sleep in one position for too long. When I get up in the morning it's the worst, I can't even stand up straight, so I get up, get my kids up and get them breakfast then have to sit leaning to one side till it passes which can take anywhere from one to 3 hours. I can't sit for too long and I can't stand for much longer than 10 minutes. Taking a walk.....might as well forget that idea, and I limp almost all the time now. There isn't one part of my life that isn't affected by this. My husband of 6 years has been for the most part sympathetic but lately that seems to be diminishing also. As the pain becomes worse the less I can get done as far as house chores; I hate that because I used to be the person that everyone used to say had the spotless house. I just can't do it anymore, not even half of what I used to be able to. I know it frustrates my husband and I can even understand it to a degree but it's horrible to feel so awful then in a moment of anger have the person you love make you feel worse by calling you lazy. I have scoliosis, rotoscoliosis, spondylolisthesis, spinal arthritis and I think pinched sciatic nerve (the numb pain in your pelvis and shooting down a leg). I don't even have the words to express the despair I feel at living like this.

    To anyone reading this, thank you and I'm sorry to go on like I did. I really needed to though because I have never been able to before.

    I really would welcome your stories as well. I look forward to getting to know you all.

  2. #2
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Hi Annabelle, venting is good! Sorry to hear you are in so much pain with your back and it's causing you so much grief and frustration. I don't have back issues but I have had other issues over the years and it has really caused a lot of strain on our family especially between me and my husband and it felt like when I was really down he gave me a good kick and I was so angry and upset. Men can be so insensitive at times. Anyway, nice to meet you and I'm sure there are plenty of others who have similar experiences to yours and will gladly share them with you.

  3. #3
    Join Date
    May 2009
    Posts
    3,745
    hi annabelle
    i retired early in 2007, due to pain...i, too, have scoli, degenerative disc disease, spinal stenosis, spinal arthritis, hypokyphosis, listhesis, etc etc...and havent had surgery...yet...
    i am much older than you are, and my scoli didnt bother me too much until i herniated discs, about 7 years ago...
    i left 2 jobs in NYC that i loved...day and nite...just couldn't handle it physically anymore...especially the 100+ year old building with 5 flights, no elevator!

    i take hydrocodone, oxy on some days...botox shots for thoracic spasms, which work, but nothing has worked for the lumbar pain...have tried most all the shots, epidurals, facet blocks, etc...

    soooo...you have all my sympathy...i know how the morning feels when one is so stiff...i need a few pills and a few hours to "loosen up" a little! then the end of the day, once you sit down, and the pain and fatigue come flooding in!

    i don't know if it helps to know you have company...in a club no one really wants to join....but you do...

    jess

  4. #4
    Join Date
    Aug 2009
    Location
    St. Louis Missouri
    Posts
    48
    Quote Originally Posted by anabelle75 View Post
    I'm new to this forum and am so glad to have found it. This is a difficult condition to endure alone. I feel like I'm screaming with pain, sadness, frustration, fear, anger inside while smiling on the outside out of pride or even a kind of shame at this horrible infirmity. I'm a 35 year old female, was diagnosed at 13 after I badgered my doctor for about 2 years that there was something wrong with my back, and had a fusion at 14. My body feels like it's at least twice my age. This is such a horrible condition to live with constantly. People may know that you feel pain, but really, unless they're living with it they really don't understand what this is like. I feel at the end of my rope often and feel like there's no one who understands what it's like to live in constant and often high levels of pain. There's no relief no matter what time of day, not even sleep gives any kind of respite from it; it wakes me up if I have to roll over or if I sleep in one position for too long. When I get up in the morning it's the worst, I can't even stand up straight, so I get up, get my kids up and get them breakfast then have to sit leaning to one side till it passes which can take anywhere from one to 3 hours. I can't sit for too long and I can't stand for much longer than 10 minutes. Taking a walk.....might as well forget that idea, and I limp almost all the time now. There isn't one part of my life that isn't affected by this. My husband of 6 years has been for the most part sympathetic but lately that seems to be diminishing also. As the pain becomes worse the less I can get done as far as house chores; I hate that because I used to be the person that everyone used to say had the spotless house. I just can't do it anymore, not even half of what I used to be able to. I know it frustrates my husband and I can even understand it to a degree but it's horrible to feel so awful then in a moment of anger have the person you love make you feel worse by calling you lazy. I have scoliosis, rotoscoliosis, spondylolisthesis, spinal arthritis and I think pinched sciatic nerve (the numb pain in your pelvis and shooting down a leg). I don't even have the words to express the despair I feel at living like this.

    To anyone reading this, thank you and I'm sorry to go on like I did. I really needed to though because I have never been able to before.

    I really would welcome your stories as well. I look forward to getting to know you all.
    Hi Annabelle:

    It was good to read about your pain. Not that I am glad you have it but because you sound so much like me. I too have daily pain. I am 55 (a lot older than you) but most days I feel like I can't make it any longer too. You are so right when you say no one really understands our pain. It's true but I can't blame them. You need to do whatever you can to minimize or help your situation. ie: Find a ortho doc that specializes in scoliosis. I got most of my relief with nerve root injections. I am now fused (T3-S1) so I am not able to bend. But still have the same pain as before the surgery. Not sure why. I have laid out my house so everything I use is up high. I have grabbers hanging in everyroom. It looks a little messy to the outside folks but I don't care. I use many different size & shape of pillows to give me relief. I do get relief in bed and when I am in my recliner. (A Queen Anne recliner - higher up so it's easier to get in and out). But with both I use cushions and pillows. I only have 2 positions in bed - both require pillows to help me. Under my knees, of course and when on my side between my knees. Must keep hip and shoulders aligned at all times. Cervical pillow helps keep the head in proper position. Do whatever it takes to get you some kind of relief. I only get about 2 hours of total relief a day. Besides when I am sleeping soundly 7 hours (with 3 or 4 position changes). But even the shortess relief makes a difference. Just keep the faith and remember, God doesn't give us more than we can handle. Take care.

  5. #5
    Join Date
    Apr 2009
    Location
    Aspers PA
    Posts
    19

    In the Same Boat!!!

    Hi there! Please do not feel bad for venting! I have all the same problems you do and I am 31. I too feel much much older. My husband while he tries to understand...is at the end of his rope with me being in constant pain and unable to keep up with the things he feels a wife should do. I totally understand! Its soo hard to keep going each day when you have pain and feel like you can't even get out of bed in the morning. I also go back and forth feeling like a bad mom because i can't do the things a mom should do. I suffer with depression and it always gets worse during this time of year when my pain is worse...i guess due to the weather. Please feel free to email me on a more personal private level and we can talk more. kidbusiness2@localnet.com I think we both need someone good to talk too!

    Sending Prayers your way,
    Julie

  6. #6
    Join Date
    Dec 2010
    Posts
    6
    Wow, thank you all for the nice replies! Having even one person who really understands goes a long way. I'm really glad to have stumbled upon this site, the support and information on what's worked and hasn't worked to help is incredible and so necessary. You all can't even imagine how nice it was for me to pop back in here and find these replies. The venting helped, the kindness and words of encouragement were the extra nice bonus.

    Thank you all

  7. #7
    Join Date
    Nov 2010
    Location
    cambs england
    Posts
    8
    Anabelle, just came back onto the site to see if I got a reply to help me with my back pain from scoliosis but I got none. I felt so alone when I posted my 2 threads, + realised I got no help, until I just saw this thread you posted. You see, I had scoliosis at 13 & am now 36. I get frustrated with how things are, & I feel like I'm doing less & less every year. Worried about what the future holds all the time while my confidence & self esteem gets lower. What sort of help do you get, do you see any health professional for support? Can't any form of exercise help prevent our problems getting worse? Do you get any treatment at all? Surely we just can't be left alone. How do you cope?

  8. #8
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    Quote Originally Posted by mwright View Post
    Anabelle, just came back onto the site to see if I got a reply to help me with my back pain from scoliosis but I got none. I felt so alone when I posted my 2 threads, + realised I got no help, until I just saw this thread you posted. You see, I had scoliosis at 13 & am now 36. I get frustrated with how things are, & I feel like I'm doing less & less every year. Worried about what the future holds all the time while my confidence & self esteem gets lower. What sort of help do you get, do you see any health professional for support? Can't any form of exercise help prevent our problems getting worse? Do you get any treatment at all? Surely we just can't be left alone. How do you cope?
    Dear mwright-- I'm so sorry you felt slighted. Sometimes people just don't know quite how to answer, or sometimes a post happens at a time when not too many people are reading posts... whatever the reason, please know that there are caring people on the forum. It sounds like you need to see an SRS revision specialist to see what is going on with you. There are different problems that can have happened to you since your surgery, but you need to see someone who is a highly trained specialist, not just an orthopaedic surgeon. There are many members on here who have had revision surgeries and live lives now that they once dreamt of having back when they were suffering. Best wishes in your journey.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  9. #9
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Hi Annabelle, if you are open to the idea of a revision surgery I *highly* recommend Dr. Lawrence Lenke in St. Louis, MO. He takes the cases no other surgeon will touch. For more info on him see his website: http://www.spinal-deformity-surgeon.com/.
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

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